What is Wrong with Me?

For as long as I can remember I have experienced every day pain. I realized a few years ago that it isn't normal and started seeing doctors but they would not diagnose. I supsected Fibromayalgia because my mother has been diagnosed and I have some of the same symptoms she does, but mine are less severe. I have pain in my elbows and shooting pain in my arms and legs. Every few months I get pain in my thighs that feels like sandpaper rubbing on my skin and it slowly progresses to deep shooting muscle pain. Lasts for a week or so then goes away. Sometimes this happens on my arms but not as often. Doctors press on my joints and ask if it hurts. Well, no. Not to me. Maybe it would to you but I'm used to it. I don't know what normal is. It's random and I can't make it start or stop. It suprises me and nearly knocks me on my ass sometimes.

I was diagnosed with Epstein Barr and Raynauds Phenomenon in high school. Doctors ran all sorts of tests when my legs broke out in open infections but everything came back normal. I am only in my 20's and I can physically handle everything just fine, it's not to a point where I think I need treatment. However, it's frustrating not knowing what's going on. If I hurt because of Fibro or some other condition. If the pain I'm feeling now is harmless or something more serious. How do I determine that? I just try to take care of myself as best I can, excersizing and eating right. What else can I do?

My ANA count was high, all I was told other than that was everything was normal. I was referred to several different doctors, all ran tests and all came back the same. I saw several specialists who simply told me I was making it up. One was offended that I said she didn't understand when she prescribed me asthma medication. I did see a rhuematologist (the only one in my state of Alaska) and she was at a loss. She tried but said I didn't exhibit enough symptoms to be diagnosed with any illness. She couldn't rule anything out but couldn't diagnose either. Sigh.

Thanks! That is very helpful. I wish I would have done this years ago and gotten more info instead of blindly going from doctor to doctor.

Hi AKRain, I'm in AK as well! Welcome. I was diagnosed earlier this year but am thinking I have had fibro for a long time. There are actually two rheumatologists in Alaska; yours (the female) is in private practice and mine (the male) is traveling constantly to rural Alaska to provide mobile internal medicine clinic. They are both incredibly hardworking and cover the WHOLE state's rheumatology needs.

Lyme and Lyme-like illnesses aren't common here in AK (no deer ticks or carriers) but you can get it if you travel out of state. At my hospital, we run the same bloodwork every couple months, so we can see consistency over time, or things are rapidly progressing. I get tested for everything, vitamin levels checked, thryoid, you name it. These tests are valuable because they are measurable, trackable data. The way I see it is, as more and more becomes known about FMS, tied to the data in my chart, all the tests would establish a timeline and a benchmark of my pain. Keep exercising and eating well. I am finding that this, plus enough sleep and meds, is the best way for me to balance work and life with pain. I am dreading the coming winter though, because I felt such intense pain last year when we had those 3 weeks of -40F in January!! And definitely be persistent. I have a good relationship with my primary care doctor, and between him and the rheumatologist, we decided that my primary care doc would be the main provider, in consultation with the rheumatologist. If you are thinking of a new approach, maybe seeking a new primary doc for a second opinion might be a solution for you? In any case, welcome - it's great to have one more Alaskan here! (I think there is another out there in the Healing Well ether too!)